How learning about health literacy helped us design better information for new BHD patients

Health literacy is defined as the ability of an individual to obtain, understand and process health information and services needed to make appropriate health decisions (Institute of Medicine, 2004). Those with poorer health literacy have poorer health, find medication difficult to manage and have greater mortality rates (Berkman et al., 2011). The Information Standard recently ran a workshop on Health Literacy for information providers, and we were fortunate enough to attend.

Gill Rowlands, a GP and health literacy lead for the Department of Health, presented unpublished data showing that health literacy levels in the UK are generally low, and that low health literacy maps with areas of deprivation. Up to 74% of people in the low health literacy group were not able to understand health information commonly circulated by charities and the NHS. However, even in the higher literacy group, up to 24% of people could not understand the same samples of health information. This suggests that in order to improve health outcomes – aside from initiatives to improve health literacy – health information needs to be made more accessible to the general public.

With the tools acquired at the workshop, we decided to review our BHD information pamphlets. Using the Simple Measure of Gobbledegook (SMOG) calculator, we found that most sections of the pamphlets scored 18 and above, meaning that some of this information might not be accessible to at least 43% of our target audience.

We have received generally positive feedback from patients and doctors about the pamphlets, and they provide some very detailed information about BHD in a handy format, so we did not want to retire or significantly change them. Thus we decided to produce a second range of Introductory Pamphlets, covering Diagnosis, Skin Symptoms, Lung Symptoms and Kidney Symptoms.

These new leaflets are aimed at people who are in the process of making early decisions about whether to see a doctor about their symptoms or if they need to get tested for BHD. We felt that providing these shorter leaflets for people new to BHD, whilst keeping the original leaflets (now called Advanced Information Pamphlets) for people who want more detailed information would serve people at both early and later points in their “BHD journey”.

The new leaflets have been designed with the principles of the Easy Read and Plain English campaigns in mind. Specifically, we have only included information we thought most relevant to people new to BHD, and use simpler and more informal language. To aid those with difficulty reading – whether due to low literacy levels, bad eyesight, learning difficulties or dyslexia – we use a sans serif, large font; have increased the amount of white space between lines; and only use diagrams or pictures that directly relate to and supplement the text.

In order to test whether the new leaflets communicate the intended information, we developed a questionnaire to test understanding of BHD after reading the leaflets, and asked friends and family with no prior knowledge of BHD to take the questionnaire.

Based on their answers, sections that were not getting the intended message across clearly have been re-written and a quality of life statement has been added to the “What now?” section of the diagnosis leaflet. Additionally, the pages have been re-ordered so that the pages are in numerical order, rather than in the order required to fold into a booklet once printed, as testers felt that this was confusing, especially if people only wanted to read the pamphlets online. The average SMOG score of the leaflets is now 12, meaning that up to 85% of our target audience should be able to fully understand these leaflets and make decisions based on the information in them.

As these leaflets are new, we would greatly appreciate any feedback on them. If you would like to take the questionnaire, please download it here and return your answers to us at contact@BHDSyndrome.org. Alternatively, if you don’t want to do the questionnaire but would like to give feedback, you can email us at the above address, or fill out our online feedback form.

[The SMOG score of this blog is 19, which is within the skills range of the average Times, Telegraph or Guardian reader.]